Thursday, January 3, 2013

Jean was a retired physician who was diagnosed with Alzheimer's disease just after the birth of her first great grandchild. She lived a life filled with prosperity and good health. She was adored by her family, and touched the lives of many. Jean was predeceased by her husband, Robert, her partner of 55 years.

At the age of 87, after setting off a small fire in her kitchen, Jean moved into a retirement home. She thrived there for a number of years, taking an active role in many of the home's social events. She was an avid bridge player who could still play a wicked game despite her memory loss.

I met Jean at the University Health Network memory clinic in Toronto, when she was brought in by her family for an assessment of memory loss. She took the diagnosis of Alzheimer's disease in stride, and never quite accepted her impairments as anything more than one would expect for her age.

I met her again a few years later as an inpatient on the geriatric psychiatry unit at the Toronto Rehabilitation Institute, where patients with dementia associated with severe behavioural problems are assessed and treated. I barely recognized her. She was a shadow of the woman I had met a number of years ago. Along with her significant weight loss, she was incontinent of bowel and bladder and would hit, kick, scratch and bite staff that rendered her personal care.

Despite having had a number of serious falls, Jean constantly and without purpose paced the unit both day and night. She was no longer able to carry out a meaningful conversation, having lost her abilities to express and understand language. More importantly, Jean was no longer able to participate in critical health-care decisions that profoundly impacted her dignity and quality of life.

Individuals in end-stage Alzheimer's often lose their capacity to eat. Even when fed by others, they are either unable to swallow or simply refuse to consume food, as if their body is shutting down in anticipation of death.

When it was clear that Jean was not able to attain adequate nutrition to sustain life, her family insisted upon the insertion of a feeding tube. This decision was made despite detailed explanations to the family highlighting the evidence showing that tube feedings in such situations do not prolong life. They are more likely to increase suffering.

The family also was aware that Jean would need to be constantly physically restrained in order to ensure that she would not pull the tube out.

Despite learning that starvation at the end of life is not an unpleasant experience (as we know from the reports of terminal cancer patients), they simply refused to let Jean "starve to death." Jean's life lingered on for a few more days, until she eventually succumbed to an infection, which did not respond to antibiotic treatment.

Would Jean's care have been different had she been suffering from end-stage brain cancer? Would attempts have been made to prolong her life (and, as many health-care providers would suggest, thereby prolong her suffering and death)?

Based on my experience, I suspect her case would have unfolded differently: Most families realize that suffering at the end of life in individuals with cancer is worsened through intrusive medical interventions such as mechanical tube-feedings. Why then, do patients with dementia too often receive less compassionate care?

Most people recognize that Alzheimer's disease affects memory. However, few appreciate that Alzheimer's disease also is one of the leading causes of death among senior citizens. While most people understand that end-stage cancer requires a palliative approach (providing comfort and compassionate care at the end of life), patients with Alzheimer's disease and related disorders often are deprived of that care.

Are the two conditions so different that the approaches should be so disparate? Not really. The inevitable outcome is the same. Therefore, the goal of providing comfort and compassion while maintaining dignity should be the same under either condition.

There will always be those who argue that the sanctity of life demands aggressive medical intervention, no matter what the cost is to the individual whose life is being prolonged. But in the case of patients with terminal Alzheimer's disease — people who are incontinent, who are unable to communicate or comprehend, who are bedbound and can no longer recognize their family nor the world around them — attempts to extend life often do little but cruelly prolong death and suffering.

I believe that these patients would recognize this fact were they of sound mind. Family members, care providers, ethicists and religious leaders debate such end-of-life issues. But does anyone listen to the suffering patient, even when the patients can no longer speak for themselves?

Death is a frightening and unpleasant event, which most of us choose to ignore despite its inevitability. We may have little choice in determining how we die, whether in our sleep from a heart attack or slowly from cancer; or, like Jean, from the ravages of Alzheimer's disease. We can, however, have an enormous impact on the terms of our care as we die.

This can be achieved by informing our families and substitute decision makers about what we would want to have done while we are still capable of making those choices. The law ensures that our wishes be respected.

Whatever your ideological and spiritual beliefs, the decision on how your life ends can and should be made by you.

To ensure this, talk with your family about how you would like your care to be rendered in the event that you are in a terminal state, and speak to your physician about an advanced care plan. Do it now, perhaps as a New Year's resolution. Jean's example shows what can happen when those decisions are made by others.

Dr. Keren is the medical director of the Toronto Rehabilitation Geriatric Rehabilitation Program and the co-director of the University Health Network Memory Clinic.